andie
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That’s great news Rena! I hope the Doctor will be putting the Nurse in Radiology right!! Keep positive
Hi Lainy & Marion, I have posted in members section as I don’t want to take over Renas post lol xx
Hi Bob,
What I small world, I am from Upper Gornal!! Where are you being treated? My Dad was under Mr Bramhall at the Queen Elizabeth, Birmingham.
Rena,
My Dad had 3 metal stents with the hope of chemo, so I would definately check this fact with the Doctor. They can clean metal stents out if they get blocked with sludge etc, and can also either add another metal stent or put a plastic one inside the metal, depending on where the tumour is. My Dads was right in the middle of the Y section of the bile duct, hence why he ended up with 3 metal stents.
When my Dad didn’t have much appetite the Doctor prescribed a fruit drink with all the vitamins and mineral he needed, they are called Ensure in the UK. My dad enjoyed little and often rather than big meals, soups, jacket potatoes, and rice puddings.
Thinking of you
Andie
Julia – I have messaged you via fb, but please accept my deepest sympathy on the loss of Susan. Heaven has gained a truly beautiful Angel xxx
The Next Room
Death is nothing at all, I have only slipped
away into the next room. I am I, and you are you.
What ever we were to each other, that
we still are. Call me by my old familiar name,
speak to me in the easy way which you
always used. Put no difference in your tone,
wear no forced air of solemnity or sorrow.
Laugh as we always laughed at the little jokes
we enjoyed together. Pray, smile, think of me,
pray for me. Let my name be the household word
that it always was. Let it be spoken without effect,
without the trace of a shadow on it. Life means
all that it ever meant, It is the same as it ever was;
there is unbroken continuity, Why should I be
out of mind because I am out of sight?
I am waiting for you, for an interval, somewhere
very near, just round the corner. All is well.
For I have gone to a city where the roses never fade.All my love and hugs, to you and your family.
Andrea xxx
Dear Phil,
My Dads Metal stent blocked within 6 weeks. They cleaned it out via PCT and also added an additional metal stent. In the end he ended up with 3 metal stents. His CC was in the middle of the Y section of the bile duct. My Dad was kept on a low dose of Ciprofloxin (sp) to keep infections at bay, this worked for my Dad. They did mention alternating antibiotics so the body didn’t become used to them, but he did well on Cipro.
As with all hospital procedures there is a risk, which they have to tell you about. Dads tumor was very close to arteries, the reason why it was inoperable, his last stent procedure caused alot of bleeding which was visable in the external bag but they said it was normal. Each time Dad had PCT his bilirubin did rise the day after the procedure, they said it was due to inflammation. A few days later his bilirubin started to fall, so don’t be alarmed if this happens. They used to take my Dad back down to theatre a few days after his PCT and run dye through his tube to make sure his stent was working. Once they were sure it was they capped of the external bag.
We always built Dad up with Boost drinks after his stent procedures. Little and often food wise seemed to help him too.
Drinking lots of fluids also help with flushing the bile out.
Thinking of you both
Andie
Hi Amy,
I have replied to your other post. I went through the same with my Dad. Antibiotics will sort the infection out, they may do IV antibiotics to get into the body quicker. My Dads tumor blocked his first stent but in the end they put another 2 stents in, all metal. My Dad was then kept on permanent low dose ciprofloxin tablets to avoid infections. These worked for him. He also drank lots and lots to help flush the bile and slush through. After a stent procedure blood clots can also block the stents, they may be able to flush these out and then the bile will flow again. It takes a while for the bilirubin level to drop as the ducts can be inflammed after a stent procedure, don’t be disheartened if it rises a few days after, my Dads always did, but then it would start dropping.
Take care
Andie
Hi Amy,
So sorry to hear about your Mom. This happened to my Dad the once, luckily it was over the weekend whilst he was still in hospital. I had noticed he was sweating so much his pjs were wet through when he got out of his chair. My Dad would never complain but it was clear to see something was wrong! He’d only been taking paracetomol for the discomfort and was desperate to come home so kept saying he was ok! I spoke to the Sister on the ward and once they’d checked his temperature they started him on IV antibiotics which helped within 24 hours.
After that my Dad was kept on a low dose of ciprofloxin (sp) to keep infections in his 3 metal stents at bay, and it worked.
I hope your Mom is sorted out very soon.
Andie
Hi Agudun,
When my Dad was first diagnosed his bilirubin levels were 600 (we are in the UK so perhaps the reading may be equivalent to 60?) I know for chemo it had to be at level 50.
So glad to hear his jaundice has disappeared, that’s a wonderful sign.
Andie
My Dad had Bowel cancer in 1981, 2000 and again in 2001. He had regular blood checks for a certain cancer marker. My Dad became jaundiced in February 2010, the doctor sent him for blood tests including the cancer marker test, the only thing that showed up was high bilirubin levels. When he had a CT Scan the radiologist asked him if he’d had his gallbladder out, he hadn’t, but it had shrivelled up! This was never mentioned again and I often wonder if this was related to his CC. Dads CC was in the bile duct, inoperable due to location. I also wonder if having Bowel cancer contributed to making my Dad more prone to cc?
Dear Amy,
In April 2010 we were told my Dad had 2-3 months. His CC was inoperable. It felt like my world had been ripped from underneath me. My advice is to take each day has it comes, make memories and love each other. It is a rollercoaster journey and the bad days are made better by the good. Never give up hope. Something that we all should do as life is precious and no one knows what’s around the corner.
Nothing can prepare you, everyone is different in their CC journey. My Dad had no pain at all, and even when he was bright orange from the jaundice, he had no itching or discomfort. He passed peacefully at home.
Stay strong.
Thinking of you x
Dear Phil,
I’m so sorry you have had to recieve this news. I know what it feels like as
your post brought it all back about my Dad. When he was first diagnosed in April 2010 he too was told to go home. The hospital couldn’t fit a stent via ERCP so he was transferred to another hospital and had one fitted via PTC. Chemo wasn’t an option either due to Dads bilirubin levels always being too high. We did get second opinions but the outcome was the same, it was inoperable. BUT Dad went on to have 3 stents fitted via PTC and although in the end he had an external drain bag, my Dad was never in any pain and as for the first doctors saying my Dad had 2 months, well he proved them wrong, he fought another 10 months. No one has an expiry date stamped on them, Doctors aren’t God and everyone handles this cc journey differently, this is what is so unpredictable about cc.We live in the UK. Dad did get his will sorted out on hearing this news, and also had to give up his job. We also got a second opinion to put our mind at rest that we had tried every option. Dad started taking hot water and fresh lemon juice every morning and night to help keep the bile thin. He also had tomatoe juice for the same reason. He had smaller meals more often rather than large meals, he drank lots and lots of water and squash to help flush the bile. He also had ensure drinks to help build him up.
You could look into trials or perhaps cyberknife?
Most importantly Phil, don’t give up, enjoy your time together, make memories, love each other, we are all here for you both. xx
Hi Jemima,
Lovely to see a post from you again, and even more lovely to hear your Mom is doing so well. I often wonder how she is doing.
I have looked for Andy’s link and I too can’t find it. His story was also in the Good News section but the link is coming up out of date? Like Marion said type Andy in the search engine and it will bring up the option to email him.
Take care
Andie x
Hi Phil,
My Dad couldn’t have stents fitted via ERCP, they went through his side, think it was called a PCT ??. Like Lainy said, a tube would be put through the side into the ducts, the stent would then be guided through the tube. The tube was usually kept in a few days so they could see the stent was working. Dad usually had a dye flushed through so they could see this, along with daily blood tests. Then the tube was taken out. Dad had a little discomfort from this procedure but nothing a paracetomal couldn’t fix.
My Dad had metal stents and they couldn’t be replaced. When they became blocked they clean them out and extended the stents. He went through this procedure 3 times during April to September. In the end they had to fit an external drain. He coped well with this.
Is your husband going to have chemo? We were told chemo could either stabilize or shrink the tumor. This could help the stent as the tumor can push the stent inwards and restrict bile flow, hence the jaundice.
Sending best wishes to you both
Andie
